Support
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Ebony Wort (above) is currently having chemotherapy for multisystem LCH, her bone marrow is affected.
Joshua has been fighting LCH for over 2 years Volunteer: Would you like to volunteer? Could you help? H-UK is a voluntary Charity to ensure 100% of scarce funds is spent on research and helping people with Langerhans Cell Histiocytosis (LCH) and HLH. If you can help please get in touch. Contact us on 07527 166185 or send an email to info@histiouk.net Become a Member If you would like to become a member of Histiocytosis UK to receive newsletters and updates, send your details to info@histiouk.net
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Support for patients and familiesHistiocytosis UK knows through personal experience what it is like when you, or a loved one is diagnosed with HLH or LCH. You can often feel isolated and there is insufficient support and information available. This is something we intend to change. Histiocytosis UK can put you in touch with other patients and families that have been affected by HLH and LCH, if you would like to be matched to someone in your area, please get in touch. HLH - Cameron Devenney passed away due to HLH in April 2008. His mother Anne wants to offer her support to anyone affected by HLH. You can contact Anne by email at anne@histiouk.net and if you wish, she will give you her telephone number. Anne knows from personal experience the feelings and isolation felt by parents of a child with HLH and wants to help in anyway way she can. LCH - Jason Porteous was diagnosed with LCH shortly before his second birthday and endured 11 months of chemotherapy. There was no information available to Lisa when he was diagnosed and little support. His mother Lisa is always on hand to talk to anyone and help anyone affected by LCH and their families. You can email Lisa at lisa@histiouk.net or call her on 07527 166185. Useful help Finances are the last thing on your mind when you or your child is ill, but unfortunately if long treatment is required you may need assistance - please find below some information that may help you. Adults with Diabetes Insipidus - Adults with Diabetes Insipidus can apply for a medical exemption certificate that will allow them to receive prescriptions free of charge. To apply for a medical exemption certificate, ask your doctor for Form FP92A. The form tells you what to do. Help with car park and petrol costs - You may be able to get financial help from the Hospital Travel Costs Scheme if you're on a low income, need NHS treatment at a hospital, other NHS centre or private clinic and have been referred by an NHS hospital consultant. You're automatically entitled to claim Hospital Travel Costs Scheme if you (or those you depend on) get at least one of the following:
You also qualify if your income is £15,050 or less and you also get one of the following:
If an adult or your dependent child has to travel to your treatment with you for medical reasons, you can claim their travel costs too. If you're on a low income but don't get any of these benefits or allowances, you may still claim travel costs through the NHS low income support scheme. There are hospital admistration offices in most hospitals where you can register and claim back petrol and car parking fees at each visit. For full information click here. If you need any further advice on this issue, please email info@histiouk.net Help with gas, electric and water bills - If you have to stop working for treatment, or to look after your child while they have chemotherapy or other treatment, bills can soon add up! Most major gas and electricty suppliers have charitable trust funds to help those in financial hardship. For information on trust company schemes which can help vulnerable customers with water and/or energy costs, please click here
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